Base of the tongue cancer

Hello, I am a new member and am writing to share the story of my sister Beth who just passed away from stage V base of the tongue cancer after a 2 yr. 2 month battle. Having never heard of this form of cancer, we were totally taken aback by what obstacles my sister had to face. She had both a trach and PEG tube so she was unable to speak or eat from her mouth. Her desire to live was so strong that she dealt with numerous issues related to both the trach and PEG. Her bravery was something I will never forget. She was a wonderful mother, sister, daughter and friend. I miss her everyday and have made the decision to honor her memory by creating a greater awareness of oral cancer by setting up a walk in my community and working with my dentist to set up free oral screenings. I'm hoping to be able to work through my grief and help others work through theirs on this forum.

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Im so sorry to hear about your sister. God Bless you for bringing awareness.

Ronda

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I am so sorry to hear about your sister. When you see someone you love go through this - your life is changed forever. I know mine was as my husband died of brain cancer on 4/4/09 after 13 months of treatments.

It is so important to have a cancer screen when you go to the dentist. I know my dentist does it - but we are charged. Your efforts will hopefully bring awareness to the importance of this screening.

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Thank you very much Ronda.

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I'm sorry to hear about your husband. It is extremely difficult to see a love one suffer from such a devastating disease. I wish you all the best. I'm sure you were a wonderful support and sense of comfort to him. Take care.

Johanna

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Dear Johanna - very sorry to hear about your sister. Keeping you in my prayers.

Love,

Jan

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I have been battling squamous cell carcinoma of the base of tongue since 2004. I am very sorry for the loss of your sister. I, too, am on a trake and PEG tube and can totally empathize with your sister's fight with this horrible disease. My thoughts are with you, johannabc.

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Thank you. I'm so sorry to hear that you're battling this cancer. Unfortunately, my sister had not been to a Dr. or Dentist in over 20 years and we truly believe she was having symptoms a least a year before we actually got her to go to a Dr. She was a nurse and knew what she had before she was diagnosed. I wish you all the best in your recovery. I will keep you in my thoughts and prayers.

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So sorry for your loss! For help in organizing your walk, contact Susan Nastio Lauria with the Oral Cancer Foundation. You can send me a message if you need more information on how to contact her, or if you are on Facebook, you can add me as a friend (Cathi Bourassa Carpenter).

Best wishes,

Cathi

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Thank you very much Cathi.

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I HAD been to the doctor, as I had contracted a case of pneumonia in April of 2004 due to some exposure to mold and chemicals. During my hospital, stay I noticed a large lump in the right side of my neck that concerned my wife and me. We brought it up to my doctor and to the pulmonary specialist. Both said it was a swollen lymph node caused by the pneumonia and would go away with time. I thought nothing more about it, trusting their judgment.

In June of 2004, the lump was still there. I accompanied my wife to see her allergist for an appointment she had with him. He came into the waiting room to greet us, and asked, "What the hell is that on your neck"? I told him about the pneumonia, etc., and he said that this was something we needed to check into. He felt it and then literally walked me down the hallway to an ENT doctor. This doctor, too, was rather alarmed at the size, (about that of a plum) and felt around. He did a needle biopsy. The results of that came back negative, but he said he would feel more comfortable with it out (as would I). He did the lymphectomy/neck dissection, and sure enough, the results came back malignant. At that time, they could not determine the primary sight, so I opted for radiation therapy of the neck area where the tumor was removed. 6 week regimen.

All seemed good, but in 2006 I began feeling a lump at the back of my tongue and was starting to have difficulty swallowing. Subsequent PET scan showed a tumor there. Tongue resection with forearm flap surgery followed, with a difficult recovery, but I was able to resume work and able to eat normally again. Radiation therapy and chemo followed. Recurrence in my tongue again, a second resection with forearm flap, long recovery. Was only able to eat soft foods and soups this time around, and lost intelligible speaking ability, so had to retire from law enforcement. More chemo. Was told I was terminal in 2008 and disease has continually progressed to the stage where I am now, on a permanent PEG tube and permanent trake. Tumors have blocked my throat and airway so eating and breathing with out the devices is impossible. Tumors have also spread to my neck, sinuses, left eye socket, chest and armpits. I continue chemo with the hopes of slowing the tumor growth and extending my life. I remain optimistic and hopeful. I have so much to live for.

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I am so sorry to hear about your struggle. This cancer is so destructive. My sister wanted to live and went through horrendous treatments and procedure to do so. I wish I could say something to make it okay. I can't imagine how hard this is for you and your family. I will keep you in my prayers. I am doing what I can to create more awareness of oral, head and neck cancers. I am working to set up a walk in my community in honor of my sister and the many others who are coping with this cancer. I will be thinking of you and wishing you comfort.

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Thank you, johanna, for your kind thoughts, words, and prayers. While this is a destructive disease, I am blessed to have had such skilled, caring and good doctors and nurses. Also, my wife has been an unbelievable caregiver and supporter throughout this ordeal. Never forget the fact that your sister knew how much you loved and supported her how much that meant to her. God bless you.
PapaTee

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I loved her very much too. I miss her terribly. She also had wonderful doctors and nurses. Her husband was such a fantastic caregiver. We don't always realize the strength, courage and love of those around us until something like this occurs. I would do it all over again. We formed a bond greater than I think would have happened if we both lived to be 100. She is my guardian angle. Take care and please keep in touch.

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Johanna

I'm so sorry to hear about your sister. My boyfriend of 9 years passed away July 19, 2010 of tongue and throat cancer. I know how tough this. I'm glad you are doing something to help with awareness. I'm still trying to find a group close to me that I can latch onto to help raise money.

We can all fight this together. This forum will always be here for you.

Much love - Cathy

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Johanna,

I have also lost my sister recently (Jan 2011) to head and neck cancer. I understand your need to bring awareness to this illness. Not many people know anything about it. (I must admit I was one of those people.) As a result of this illness, my sister lost her ability to smile, was not able to eat, could barely speak and felt socially isolated by her facial disfigurements. She was 46 and had no history of smoking, drinking or HPV. My heart is broken by the loss of my best friend.

I too will continue to bring awareness to this disease.

Gracie

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Gracie,

I'm so sorry. My sister was unable to speak or eat as well. She had just turned 52. Unfortunately she was a smoker. She left behind a husband and 28 year old daughter who had just married in June. I am making myself as available as possible to her, and although I know I could never take her mothers place, I want her to know that I will always be here for her. Did your sister have any children? I have decided to organize an annual walk for oral cancer in my town in her memory. I want to keep people informed about this devastating disease and promote oral screenings. I just had my first oral screening at one of the free clinics during the Oral Cancer Awareness Week and I will do so every year from now on.

The first year of losing someone is so difficult. Having to go through all the holidays and birthdays are so hard. I find solace in the fact that my sister is no longer suffering. I cherish the fact that we formed such a close bond while she went through all of this. I miss her so much as I'm sure you do, but we have to remember that they would want us to go on with our lives and remember the special times and memories we had with them.

Keep in touch and let me know how you are doing. It always helps to know that there are others who know how you are feeling. Take each day one step at a time. I know it is helping me a great deal organizing this walk because it keeps her memory alive and I know she won't have died in vain from this horrific disease.

Take care,
Johanna

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Sorry to hear about your loss. I will be sure to keep your sister and all of her family in my prayers. My 70-year-old father had oral cancer that spread to a mass in his neck. He waited over a year to go to the dentist for the sore in his mouth and after being maxed out on radiation had a 9 hour surgery to remove it from his mouth as well as a lymph node in his neck. A year later, he had the mass in his neck and also waited until it was the size of a baseball to see a doc. I thought he was exaggerating over the phone but when I saw him at Christmas, it was huge. It burst before chemo and now he also has to deal with the open wound (it's very painful but apparently needs to heal from the inside out, if it ever heals ??). I do not believe they want to attempt surgery right now, so he just continues with chemo. It is very difficult as he lives alone in another state with no one to really help him. Apparently, this sort of cancer can be very aggressive and too many people aren't very aware of it. I commend you for your efforts to bring more attention to this cancer.

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PapaTee - you sound very strong! And it sounds like you have a wonderful wife. Keep up the fight! God be with you on your journey.

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